Yesterdays appointment, and problems with the system

Drew had a clinic visit yesterday and it went pretty well! We haven't been to clinic for about 4 months because I didn't want to pull him out of school for an appointment, so with good health, we pushed it out an extra month and went just yesterday. He's been incredibly healthy for the past 18 months, a longer stretch of time without any oral or IV medications than he's ever had which is amazing. His PFTs were low yesterday - not so low that any action needed to be taken but low enough to cause some concern from his doc. But here's the thing - I've seen him do his PFTs before, and while he's still relatively new to the process, he wasn't doing them quite right. I can't put my finger on exactly how it was different, but he wasn't blasting all his breath as hard as he could right off the bat, and I don't think its because he couldn't due to an illness. When he does his breathing treatments at home, he uses a device called an Aerobika that he blows into with long, hard blows that cause a positive pressure in his lungs and opens them up (hes got malacia that makes them extra floppy) and allows him to move mucus. I think he's got the Aerobika technique mixed up with the PFT technique and I'm not sure how to fix it. We are going to come back in two weeks to try again.

Otherwise, the appointment was pretty unremarkable. He's gaining weight like a boss and is happy and healthy and so are we. I'll do a culture this weekend when he's been off of one of his treatments for a few days so we should know more about any new bugs in another week. Fingers crossed we are still just dealing with the beast that is achromobacter. We will also repeat his PFT before we head back to Philly to see if we can get his number back up, and if its still low will have to discuss options to treat or try to figure out what's causing the low number.

Weight chart from July 2013 to present! BOOM!

The next part of this post is in no way a dig at our hospital or our care team, but rather a general annoyance with the system that I experienced and I've heard many of my peers experience. These are my feelings and opinions and don't reflect that of anyone by myself. And i'm so annoyed that I even stated that. 

Per the usual, upon arrival at clinic a nurse or another assistant will come in to take Drew's vitals and then review our med list. And every time, I ask why we are doing it with the response being, "We just want to make sure everything is up to date", though I've yet to see anything change. So we went through the list:

Her: "When was the last time he took Albuterol?"

Me: "4 years ago"

Her: "Atrovent"

Me: "2 years ago"

Her: "Pulmicort"

Me: "6mo ago"

Her: "Azithromycin"

Me: "The liquid or the pill?"

Her: "The liquid"

Me: "3mo"

Her: "The pill?"

Me: "This morning."

Her: "Fluconazole"

Me: "That was just a 3mo treatment"

Her: "So he's off it?"

Me: "Yes"

And on and on and on. We got all the meds hes taking, and "got rid of" the meds he isn't, and we went on with our appointment. 

Then before I left, I got my After Visit Summary (AVS), a nice little report of what we discussed during the visit, recommended action steps (make your next appointment, for example), and an updated medication list. Only it's not. Now I don't really care too much whether the med list on my AVS is accurate because I don't use the AVS for much, just a reference or reminder, or to tell my husband what we talked about in clinic. But if it's wrong on my printout, its wrong in my EMR, and the next time I'm asked what med's we are on, we will waste everyone's time by going through this whole process over again. And nothing changes. I've experienced this countless times with homecare nursing, sometimes coming twice a day and having to go through this process, and the list has never, even been right. Before he has gone in for procedures I will review it with someone on the phone the night before, then a nurse in the OR that morning, then again with anesthesia before they take him back and every single time we make the exact same corrections. I think the reason it doesn't change is because only the prescribing physician, the one who put it into the EMR, can take it out, so when you think that the nurse is making the changes they're really just making a note of the changes, flagging them as needing changed, and expecting that the doctor will at some point go in and make the changes. But that doesn't happen, and at no fault of the doc or the nurse or anyone else specifically, except a faulty system. What if something happened to Drew and I wasn't there to tell them what medications he's taking and with what frequency? What if someone less empowered than I used that AVS as a guide for taking their medications? What if there were harmful drug interactions in that list - something new added when the old stuff is never taken away? How might we fix this? The kicker of this image is that is states very clearly that "this list is accurate as of 6/13/16 at 11:59pm". Only it's not. 

Another flaw of the system is appointment scheduling. I need to take Drew back for another appointment in 3 month, and then in 3 months again. I have a preference for the first appointment on a Monday morning, and I also have a preference that we do these appointments at a time that is least disruptive to his life, specifically days off of school. It doesn't matter what anyone else thinks I should do or not do, should deal with or not deal with. This is our life and our preference and we should be allowed to live it according to our own priorities. I digress.

So I called to schedule an appointment for September. In my mind, this should be early enough to schedule an appointment for September 12, a day that he will be off of school. Well there are no appointments available on September 12, only the 19th, and not until later in the morning. So I ask about October, willing to push to the next day off of school so that he's allowed to keep doing what he wants, which is being at school with his buddies and not missing out. Well the schedule for October isn't available yet so I can't schedule for October. I go back to the 19th that they had proposed, however the infectious disease doc that we also see during our appointments isn't available on the 19th so we would have to make a separate appointment to see him. Listen, I don't like to come into a hospital with my kid who is susceptible to dangerous infections in the first place. Now you want me to pull him out of school AND bring him in twice? I'll figure out another solution.

After 12 minutes on the phone I hung up with no appointments and no plan. I can schedule a haircut for my kids from my phone - why can't I log into MyChart and browse through appointment options that work for me? Why does a system that weighs so heavily on patients and families make it so hard to do such simple tasks? What can we do to change this?! And for the record, I don't think these are unreasonable requests. If a motivated, engaged, health-literate adult has this much trouble navigating the system, are we actually maybe causing harm by not addressing these seemingly soft problems?